Ds had a new type seizure - worried meds are making his epilepsy worse

[DisAstrophe]

Ds is 7 and has been treated for absence seizures for 2.5 years (he's probably had absences for a lot longer). We've never been able to get control of the absences for more than a couple of weeks at most.

Yesterday he had a new type of seizure. He was sitting at the table drawing when we noticed that he was staring into space. He was smacking his lips and his head was slowly turning from side to side. He looked like he was asleep and when dh passed his hand in front of ds's eyes he didn't blink. This lasted two or three minutes.

Afterwards he was very tired and we put him on the sofa to sleep. Stupidly I woke him up after 15 minutes as his tea was ready. He was hard to wake and then was crying saying his head hurt and eye hurt. He was pale and felt sick. We let him go back to sleep and after an hour he woke up very hungry. He took a while to perk up but then was eating and very energetic and chatty.

He has been also been having even more visible absences -with three or four in rapid succession and once or twice and nearly fallen over.

School say something very similar 3 weeks ago and I had to go in to pick him up. They also called me last week twice because they are worried as his energy levels are so variable at the moment and they are seeing so many absences clustering together.

I've emailed his doctor to ask for advise. But would also welcome any views on whether this could be caused by us slightly increasing his medication 2 days beforehand. He's been on lamotrigine for over a year now and is on a medium dose for his weight.

Was very scary seeing him so upset.

cognitive slowing.
As demonstrated above.

Ds has started having complex partial seizures for just over a year now, it seems to develop over the previous year (we thought a bad stomach ache as he said it hurt.) He starts looking blank or talking gibberish and lip smacking, arms flop around, he turns very pale almost grey like and last a min to several and can have several concurrent ones over several hours. Then he has a deep sleep for min several hours (hard to wake up) and then is fine again, well mostly. He tends to get them when he is tired, unwell or stressed. It sounds like your ds could be having a complex partial seizure.

Ds has also had two full blown clonic tonic seizures, the ambulance was called for these. They recorded seizures on the eeg (after his 2nd clonic-tonic, they were excited about catching it, but everytime they moved him it caused a mini seizure). So now he is on Carbamazepine (CBZ) (Tegretol), not sure if the right drug as still having seizures, so they just want to keep upping the dose. We have no emergency drug and they have told us to call the ambulance if the clonic-tonic seizure lasts more than 5 mins !

leonie - the pain sounds unbearable. I worry that ds would not be able to tell me about some side -effects but he would tell me if he had that sort of pain.

Spiralling that sounds exactly like what has now happened to ds at least twice in the last couple of months. Dr said he thought it could the complex partial seizure but "only" atypical absence seizures were visible on his eeg.

The clonic tonic seizures your ds had must have been so scary. I really worry about them. A previous colleague had two at work and both times fell like a tonne of bricks cutting his head open. I worry about ds hurting himself in the same way.

Sorry to hear your ds has not got his seizures controlled either. Does your ds' consultant have a plan?

No real plan, just see him in 4 months, seen 2 epileptic nurses. Ds is also HFA, but his ability to function seems to have gone, which worries me.

I was not there for the seizures, dh was looking after ds for his second and he was v. shaken, so ds slept in our room for months after. But the other night he came in our bed and had a mini seizure, so wondering if he should be checked out nocturnally, as was not expecting that.

I found this i thought was interesting clinical epilepsy an introduction.

I am finding this scary and the effect it is having on ds.
When are you next seeing anyone.

Next appointment is in July. But I can phone/email to discuss and adjust drugs at any time in between.

Can you ask the Dr about the monitoring at night?

Thanks for link - I'll have a look.

UPDATE

We saw specialist dr at big hospital recently. He thinks that ds might have a condition that can be treated with the ketogenic diet. He has ordered a lumbar puncture to confirm or rule out this dx. He also thinks that of he is right about the dx then the diet may also help with ds' learning delays.

A long road ahead but finding it tantalising that we might finally get an explanation for ds developmental delays. And, just possibly, a treatment that makes a difference. Ds' development has pretty much plateaued for the last 4 years! Trying not to get my hopes up too high as we've been on many a wild goose chase but but but ...

Hopefully we'll get the tests and a yes or no to this dx soon. The waiting is making me feel and

if he is right about the dx

Hoping you get some answers and therefore a solution very soon.

Honk.

Thanks Bluebird

The results are back and everything came back clear. So his uncontrolled epilepsy, asd and lds are still unexplained.

Poor ds - we just took him on yet another medical wild goose chase .

Thanks for sympathy. Seizures not too bad recently actually. no more partial complex seizures and probably less than 5 absence seizures a day. Really enjoying having my boy be more interactive and alert.

I know exactly what you mean. For some reason the psychologist we see for autism and his epilepsy doc always downplay the impact on his learning and interactivity of the epilepsy. They put more emphasis on the autism and low iq.

Thanks zzzzz